The Story

I have lung cancer. Today I have my first consultation with the oncologist. A world of unknown is ahead of me. One thing I know for sure is that I'll be saddled with insurmountable medical bills, on top of the medical uncertainty of my future.

United Healthcare already sent their first denial of benefits - a letter explaining that my overnight stay at Broward General Hospital following the angiogram ordered by my cardiologist was not "medically necessary."

Just what I need: Daily fights with the insurance company over paying the bills for which I pay them each month.

I know this will be an ongoing battle, both with the tumor that's invaded my body and the insurance company who's supposed to be helping me.

Fundraiser Updates

Posted on October 8, 2016

Posted on October 8, 2016

It's Saturday, October 8. I've been remiss about posting here. Perhaps I was reveling in the news I'm about to share... We had a bit of a detour here in South Florida as Hurricane Matthew threatened to further upend our world. Thankfully he stayed off shore and we got very lucky.

As one who has never considered herself lucky, I had two major strokes of luck so far this year. Not being hit by Matthew was the second one.

The first was my "not-a-heart-attack" of July 7. The x-ray of my chest to see if there was swelling of the heart turned up a tumor in my left lung instead. And thus began my lung cancer roller coaster.

Although it's far from over, we have entered the next phase of this chapter of my life...

October 5, 2016

It comes from nowhere, like the proverbial thief in the night sneaking up silently behind you to steal your life. Perhaps a better analogy is an earthquake, but only if you were trapped in the rubble, unable to climb out. It hits unexpectedly and leaves you to figure out how to survive. In a split second, everything changes. EVERYTHING changes the moment you’re told you have cancer.

Once the shock wears off, if you’re like me, you get to work. In my case, the barrage of tests was supplemented with an avalanche of articles about each new term that was uttered by any of the many doctors I’d seen. Finally, I was left to figure out what to do about these two tumors in my left lung and their aftermath.

Despite the support of an incredibly loving husband whose reading and research dwarfed mine, my obviously scared but very stoic 17-year old daughter, and the kind words, thoughts and prayers of friends – both in real life and of the radio and virtual sort– I’ve never felt so alone in my life.

The tumors were growing in my body, I was the one who had most of my left lung surgically removed and now must decide whether or not to subject my body to toxic chemotherapy. If the cancer didn’t kill me, the stress from the worry and the enormity of this decision, or the chemo itself probably would.

Back to the question: To Chemo or Not?

Before I could answer that, I needed more information. Last week, we went for a really good second opinion consultation with Dr. Luis Raez at Memorial Cancer Institute in Pembroke Pines, FL. His analysis of my situation was mostly in sync with what we were told by my oncologist, Dr. Raja Mudad from UM/ Sylvester. They both believe what the pathology said

As the tumors differ histologically, and the smaller lesion also has a lepidic component, they are best classified as two distinct primaries (synchronous tumors).

That almost sounds definitive, but not quite. Because it isn’t! The tumors are “best classified” that way, but the doctors can’t, and won’t say any of that with 100% certainty.

We do know for sure that this was NSCLC (Non Small Cell Lung Cancer), which accounts for about 85% of all lung cancer. The type is adenocarcinoma, the most common form. My case is not at all rare, but it is quite unusual for a few reasons:

I am the luckiest person on the planet because we caught it so early. If not for getting so upset after a really shitty day that I had a suspected heart attack (which turned out not to be a heart attack), I’d probably still be walking around with cancer growing in my lung. The x-ray of my heart clearly showed a mass on my lung that otherwise could have continue growing undetected for years.

I’m young! I know, stop laughing. I’ll turn 57 in November but, in the world of lung cancer, I’m a baby. Unfortunately, most people don’t discover they have lung cancer until it’s had much more time to grow and metastasize. Most lung cancer patients are in their 70’s and their disease is much more advanced than mine.

And, if we are to believe what the pathology tells us, these are two separate and distinct primary cancers, growing in separate lobes of my left lung, at the same time. Because of this oddity, I am not eligible for any clinical trials or studies. They only want common cases of cancer, not unusual ones like mine.

I like and cautiously trust these two doctors, whose advice matched what we had been told all along: that if the two tumors in my left lung were separate and distinct tumors – two primary cancers – that chemo would be not necessary because we caught them early enough and were able to surgically remove them. This is the only time doctors ever use the word “CURE” regarding lung cancer.

What About Molecular Testing?

There’s one other element to all of this. The tissue was sent for molecular testing. The first three of four results came back negative two weeks ago, but we were still waiting for the results of the test for the EGFR Gene Mutation Protein Effect Prediction when I went for the second opinion consult with Dr. Raez. At that time, he mentioned to us a national study for a drug that directly deals with that mutation. He said that if the test came back positive, we could return to the Memorial Cancer Institute, and he’d put me on the pill. Seemed simple enough. Or not.

It turns out that my very common cancer would make me a good candidate for this study. But because I had two of them, I’m ineligible for any clinical trials. Period. It seems the drug companies who fund the trials only want the most common, ordinary cancer scenarios, and I’m just too damned unusual.

So here we are. Tuesday marks five weeks since my surgery, just a week shy of three months since that fateful Thursday afternoon in early July when I thought I was having a heart attack – an event that led to the chest x-ray that very clearly showed a mass on my left lung.

I’ve long battled depression – something I’ve spoken openly about on my show, as I am doing with cancer, because I believe we’re stronger together (sorry about that), and that these diseases often make us feel so alone. I want to share all I’ve learned and experienced as a way to help others who also riding on this nightmarish roller coaster of life.

Where does this leave us?

I asked the doctor about the correct terminology. I didn’t think I was in remission –and he told me that I’m not. That’s a term usually reserved for those who’ve fought the disease via chemo, radiation and/or other modes of treatment and whose scans and tests don’t find any signs of the cancer still present.

“But obviously you can’t say that I’m cured,” I countered. “No,” he answered. “You are cancer-free,” he told me.

I have decided that I will not have chemo. That was the advice I received from the two oncologists (in as noncommittal ways as possible). What follows is a future where I’ll be watched very closely.

I’ll be scanned every three months for at least the next two years. Then, perhaps, every six months. We’ll also keep a close eye on the spot on my right lung (now very, very tiny), and I have another MRI scheduled to check in on the thing on my brain (that every doctor I’ve seen believes is a benign meningioma).

If the constant monitoring for five years shows no signs of a recurrence, then they’ll actually be able to say that my lung cancer was cured by early detection followed by surgery.

I’ll have much more to share in the coming months, including about my experience at the hospital after surgery, how hindsight may be 20/20 but is also upsetting, and more.

On top of that, I think it’s time to start working again. We have a presidential election coming up in a month!

There’s a lot to do before I go back on the air. We’ll start slowly… I hope to bring back the“What’s News?” segments as early as Tuesday! And I hope to be back on the air as soon as next week (or soon there after), starting out with a one-hour show, Tuesday through Friday afternoons from 3-4pm ET/noon-2pm PT on the Progressive Voices Network and here on our listen live page at nicolesandler.com and take it from there.

You’ll have to tell me what I missed! I think we have a lot to talk about.

After all of this, the one thing we still know for sure is that my case is unusual and somewhat confusing.

That it's confusing to me is an understatement. It caused the other oncologist we met with, a very highly respected and credible doctor, to contradict himself when David and I saw him last week, making me uncomfortable about putting my care and fate in his hands. (Read about that consultation here.)

I felt much better after meeting with Dr. Mudad, though no less confused or conflicted.

It was evident from the moment he sat down that Dr. Mudad was familiar with every aspect of my case. Still, he reviewed the whirlwind I've lived since the heart attack that wasn't in early July when we discovered the mass on my lung, thanks to an x-ray done in the ER. From the CAT scan to the PET-CT, the lung biopsy, Brain MRI, EBUS test and beyond, we then got to the pathology results from my surgery, exactly three weeks ago yesterday.

The confusion comes in because my case is just unusual. I don't want to say "rare," as that hints at something more serious. But the cancer I have is NOT rare. Adenocarcinoma is the most common form of lung cancer, and mine was caught very early. Both of them.

Yes. I have had two malignant tumors in my left lung. Two separate cancers. At least that's what the doctors at the tumor board conference believe. Although there were many similarities between the primary tumor in the left lower lobe and the smaller one in the left upper lobe, they are not identical, leading the doctors to believe they're two distinct cancers. But there's no way to know for sure.

If they were the same, that would mean that the smaller tumor was a metastasis and chemo would absolutely be necessary. Cut and dry, no question.

Remember, all along, we've been told that if they were two separate, distinct cancers, surgery would be the cure. They'd be able to cut it out, get it all, and I'd be done. But since we can't be certain that they are separate and distinct, and there's still that spot on the right lung, and the lesion that showed up on the brain MRI (that the docs mostly all believe is a benign meningioma, but we can't know for sure). Thus, the confusion and the dilemma and the questions about how to proceed. My inclination is to err on the side of caution and get the chemo, even if it would only add a 5-8% chance of helping to prevent the cancer from recurring.

But then I read up on the side effects and wonder if 5-8% is worth it.

The protocol would be 4 rounds of chemo, 3 weeks apart, using Cisplantin and Alimta. They're the same drugs used to treat mesothelioma, and I'd be lying if I said I wasn't nervous.

I'm not concerned about losing my hair. Hair grows back. I'm not even overly concerned with the nausea, as that goes away. I am worried about the peripheral neuropathy that is a common side effect from chemo and usually doesn't go away! I'm already experiencing some of that neuropathy on my body - not where the incisions were, but around the front side of my trunk. It's an odd combination of pain and numbness, and even the feel of a loose cotton shirt against my skin is often painful.

As for alternative therapies, there are many out there. To me, the most promising would make me a criminal. But I've read enough about the benefits of cannabis in not only treating chemo's side-effects, but in killing the cancer cells itself to believe in its power, but I'm not willing to risk my life to prove it. However, I have begun taking cannabis oil to help the healing and will continue to do so, law enforcement be damned.

So that's my dilemma. Our follow-up with Dr. Mudad is Tuesday, Sept. 27. Since we're already three weeks post-surgery, if I am to start chemo, we'd need to do it soon.

One last point for tonight... I keep using the plural when talking about our decisions, our appointments, etc. That's because my amazing husband, David Sloane, has been in this with me every step of the way. As he said to me shortly after we got the diagnosis, "We got cancer. We will fight this together." I couldn't ask for a more caring, loving and helpful partner in life and in sickness. I can't imagine having gotten this far without him by my side.

So, that's where we are. Feel free to weigh in in the comments section. This is a big decision, and I'd love to hear from people who've been through chemo, especially with Cisplatin and Alimta. To Chemo or Not? ... that is the question.

Posted on September 16, 2016

Posted on September 16, 2016

I had planned on posting this a few days ago. Unfortunately, the painkiller haze, the pain itself, minor (and some major) meltdowns, and my need to sleep and rest delayed it slightly.

I also want to write posts on the surgery itself (that’ll be quick as I was out for the entire thing, but there are a few notes to pass along) and my hospital stay (avoid the University of Miami Hospital like the Plague!!), so those will be coming soon. And I’ll keep you posted on the next part of the cancer fighting portion of my life as my recuperative hiatus from my radio show continues.

Up next, the Recuperation Roller Coaster….

But first, I’ve heard from a few readers/listeners that you like to hear about the technical side of all of this. You were fascinated by the YouTube videos I posted of the robotic surgery that I had and the alternative, the open thoracotomy video that I didn’t embed, but posted a link to instead.

I employ that technique a bit further down in this post. I’m sharing my one and only nude photo – so hackers can look elsewhere. Seriously, there’s nothing sexy about my nude photo. It’s a picture of the left side of my body showing the surgical incisions. But you’ll have to read on first…

Ups and Downs

I hate roller coasters. Aside from the fact that I’m terrified by heights, the huge drops make me nauseous. I don’t understand their appeal. Too bad for me, I’m currently on the most unpleasant of life’s roller coasters and I don’t like this one either, but I can’t just get off. I’ll have to ride it until the end.

This ride actually began about two months ago when we learned, purely by accident, that I have lung cancer. In the midst of the battery of tests that followed, the CT scan turned up a second tumor. The first, primary tumor was in the left lower lobe. The second one was detected in the left upper lobe.

The post-surgical experience so far has been a series of contradictions. We’d been told all along that since we caught the cancer so early, surgical removal of it meant “cure” – the only time they ever use that C word in connection with cancer.

Then, we learned about the second tumor, but the same optimistic tone ensued. “If they are two separate, primary tumors, then it’s still Stage 1 and removing them by surgery would cure me. No chemo would be necessary.

We were told that by every doctor we saw. That accidental discovery of the mass in my lung was a life saver! We found it early enough that I can emerge from surgery cured and cancer-free!

I had surgery just over two weeks ago. I’ve been fairly quiet since then as recuperation takes a lot of energy, and my emotions have been all over the place. I posted a few updates, but mostly I’d been counting the days until the pathology report came in so I’d know what I’m facing.

My surgeon, Dr. Dao Nguyen at Sylvester Cancer Center in Miami, showed me why he is not known for his great bedside manner. But I was impressed with his background, training and patient reviews so choosing him was almost a no-brainer.

We had our post-surgical follow-up appointment last Thursday, Sept 8. Although the pathology was due by Tuesday, Sept 6, Dr. Nguyen told us it wasn’t in yet! Ugh! He did say that we’d need to meet with my oncologist, as that’s who we’ll work with to determine the course of treatment. He said he’d see me in six months for our next follow-up.

Alrighty then.

Not being a very patient person, the next afternoon I texted Dr. Nguyen to ask if the pathology had come in yet! He said he’d let me know.

Then on Monday morning, after still not hearing from him, I called the Pathology department at UM Hospital directly to ask when I could expect the results. The person who answered told me that they had sent the tissue for further tests, and it would be another 10-15 days!

After I spent a while simmering, my husband awoke and asked, “What about the preliminary report?” Duh. So I called back. The person who answered this time told me that the report was there and ready. Huh?

Rather than calling the surgeon again (remember he said he’d let me know), I texted his Nurse Practitioner, Joy Stephens- McDonnough (she was the one really good part of the surgical experience). She told me she’d check with him. A few hours later, she responded, telling me to call the doctor. I did and his office then sent me the report.

The lung mass was detected on a chest x-ray ordered due to a suspected heart attack that ultimately wasn’t a heart attack. I already had an appointment set for the following Wednesday with a pulmonologist at Holy Cross for my sleep issues. As the pulmonologist is the doctor that also deals with all things lung-related, the focus of that appointment was the lung mass. He ordered a PET-CT scan and we were off and running.

When the CT scan showed that it was a tumor, the pulmonologist referred me to the lung cancer oncologists. Dr. Drew, the lead oncologist was on vacation, so we made an appointment with Dr. Dammrich who coordinated all the tests, scans, etc and ultimately delivered the final diagnosis, with surgery as the recommended treatment.

Now, post-surgery, Dr. Dammrich is on vacation, so on Tuesday (9/13) we met with Dr. Drew. At Holy Cross and all the other cancer centers we’ve consulted with, the doctors in the department work as a group, reviewing the cases together to come up with diagnoses and treatment plans. When he first looked at the pathology report, Dr. Drew was all smiles and upbeat. He was about to say something along the lines of “you’re good to go” when my husband David said he had a few questions from reading the report.

David pointed out that the report said the smaller tumor (LUL) was “Adenocarcinoma, acinar predominant, moderately differentiated,” and the primary tumor (LLL) was “Adenocarcinoma, acinar predominant, poorly differentiated,” at which time Dr. Drew’s upbeat demeanor instantly changed. He asked where we saw that.

I opened my copy of the pathology report and showed it to him. It seemed like all the color drained from the doctor’s face before he told us, “Forget everything I just said.”

I honestly can’t remember much of what he said after that, other than that he was wrong, he believed the pathology report was wrong where it says that these “are best classified as two distinct primaries (synchronous tumors),” and he now believed I would need chemo too.

I’m sure I asked him why, but couldn’t tell you what he said.

I do know that the lung cancer team there meets today and will review my case. My next appointment with Dr. Dammrich is Tuesday 9/20, at which time we’ll find out (hopefully) if I’ve qualified for a clinical trial there involving immunotherapy. If I don’t get into that one, there’s a second trial testing CMET (something I couldn’t possibly explain but has to do with inhibiting the growth of cancer cells) that I might qualify for.

Hopefully, I’ll be able to provide much more information on clinical trials soon. If I am, it’ll be because I’ve been accepted into one. These clinical trials are wonderful if you can qualify. Although you’re not guaranteed to get the experimental drugs even if you are accepted into the trial, everyone gets the standard of care treatment. In my case, the two drugs are called Cisplatin and Alimta, given every three weeks for four cycles. Once the chemo is completed, then you might possibly get the experimental drugs. Regardless, you get the chemo, and at no cost to you or your insurance company.

I also have another consult scheduled with an oncologist affiliated with the UM/Sylvester Cancer Center on Thursday. The lung cancer group there, including my surgeon, is also reviewing my case in their conference today.

**Update** This afternoon, as I was getting ready to post this, my phone rang. It was my surgeon, and the case conference had just ended. Sadly, I really couldn’t ask him a question. He had called to tell me that they had confirmed that I had two separate and distinct cancers. When I asked if he still thought I needed chemo, he told me that’s a decision I’ll make with the oncologist. He asked if I wanted to schedule a consult with the lead oncologist at Sylvester who was present at the conference, so he’s as well-versed as possible on my case. (He also mentioned that this oncologist, Dr. Mudad actually trained Dr. Dammrich. It’s a small oncological world after all.)

By this time next week, I’m pretty sure we’ll have decided on a course of treatment and will be ready to move on to the next phase of this nightmare.

If you chose to look at the incisions, please know I’ll explain all in a post about the surgery, coming as soon as I can knock it out. Just know they look so much better now than they did just about a week ago when David took those oh-so-not-sexy nudes!

Why I’m Sharing So Much

I’m writing these updates, albeit much less frequently than I had planned due to a variety of reasons, because I know that I’m not alone.

In 2016, there will be an estimated 1,685,210 new cases of cancer diagnosed. In 2016, it’s estimated that 595,690 people will die from cancer.

That same source tells us that this year, there will be 224,390 new cases of Lung and Bronchus Cancer diagnosed, and some 158,000 will die from it.

Looking at those numbers, I realized that “I’m not alone” is a huge understatement.

If I can help one more person navigate these waters, then sharing every detail of my experience is warranted.

As I’m feeling better and weaned off the pain meds a bit more, I’ll post more. There’s a wealth of information to share – the most surreal being the hospital bills starting to pour in which confirm my contention that the for profit health insurance industry is government-sanctioned extortion.

If you’d like to help financially, I’m like a squirrel foraging for winter, and have set up a fundraiser at YouCaring. com/nicolesandlercancer. As Jon Snow tells us, “Winter is coming.” (Apologies to all who are not Game of Thrones fans.) Although we’ve met our annual out-of-pocket maximum so the insurance company is paying 100% of the charges (with some fighting on our part), January will soon arrive. With the new year will come a new insurance company and new policy (UHC is pulling out of the exchanges, but honestly, I’d drop them if they didn’t drop us first), and new deductibles and co-pays.

Sadly, my relationship with cancer will last for the rest of my life. Not only is she a stubborn bitch, she’s expensive too. Please help if you can. I know I have a lot of listeners and followers who are financially comfortable. Those are the people I’m hoping will dig deep. If you’re struggling, please do as they tell you to do on a plane: Take care of yourself first. Once you’re set, then you can help those around you.